Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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I had the same experience. I had asymptomatic covid and did not know it until I saw my routine blood work where the lambda and kappa escalated together. Then three months later the numbers decreased. All my numbers have gone up and decreased after my four major joint replacement surgeries. I was diagnosed. With IgG lambda in 2002 - 22 years ago.
Everyone has cellular mutations. The vast majority don't replicate, our bodies reject them. With MGUS, a deranged plasma cell took root in our bone marrow and replicates (hopefully very slowly). I've had MGUS for +8 years (no telling how long the mutated plasma cell has been illegally parked), am 70, and MGUS doesn't limit me. I still bike thousands of miles a year, volunteer, and have fun. Did something cause the deranged plasma cell? I'll never know. Here are some risk factors: https://pmc.ncbi.nlm.nih.gov/articles/PMC2947966/#:~:text=The%20median%20age%20of%20diagnosis,are%20younger%20than%2040%20years.
I only know a few months that a have MGUS. I‘m
very anxious. I have never heard about those things. I‘m 70 years old . I‘m very hopeless! Excuse my english, don‘t speak and write it often. I‘m from Luxembourg and i would like to now more about MGUS!
Thank you so much!
It is hard getting a diagnosis of MGUS. It would be good to get more information from your doctor, and hopefully see an oncologist/hematologist for greater knowledge. MGUS is precancerous plasma cells in our bone marrow. Risk of it turning into cancer is about 1%/year, so for most people it never progresses to cancer. MGUS does not have symptoms unless it progresses to multiple myeloma or other active phase. I try to focus on things that I can change, such as diet, activities, and fun. Here is some background info on MGUS: https://my.clevelandclinic.org/health/diseases/17744-monoclonal-gammopathy-of-undetermined-significance-mgus
I would like to follow your comments here because I have just been diagnosed also and I’m 75 and very anxious about this Health issue. PS I’ve actually visited Luxembourg many years ago. It’s lovely there.
Thank you for this upbeat response I did get this diagnosis from a hematologist which was shocking to me. Otherwise I am the healthiest 75-year-old I’ve ever known. I don’t even have a prescription! How do you stay active and eat right but I must say this has allowed depression to creep in and I’m finding it hard to stay on my tasks I do have excessive fatigue is that just the depression?
MGUS is considered asymptomatic. If you have excessive fatigue then it would be good for doctors to see if there is anything else going on. Checking kidney and thyroid function, and overall blood/urine tests can be useful. Getting hit with MGUS was depressing for me, and it did take some time to work through the grieving process. I didn't have fatigue so could still escape with nature walks/biking and other interests. It is good to have people you can talk with about what you are going through.
Hi!
I just found this post, I know it’s an older one but thought I’d hop in here anyway & hopefully someone will respond back.
I was diagnosed with MGUS about 30yrs ago. Nobody seemed to know much about it & I pretty much figured I’d be dead by now.
It was terrifying. I still had 2 kids at home & so I made my arrangements for after I passed. I was in my late 30’s. Most of the Drs were wrong about what was happening in my blood. And no one could tell me why I kept getting DVT’s. Finally after my last clot in my IVC in 2016 I saved some money & went to Mayo.
I finally found Drs who could tell me exactly what was going on. Absolutely incredible! I even had a BMB. I had refused one for many years because I didn’t trust anyone.
I’m at 5% myeloma cells & was told they don’t treat unless you’re at 6%.
And then of course COVID hit, I lost my mom, family moved, I moved….just life in general happened.
Recently tho my blood tests from my GP have shown a few changes.
I don’t know if it means anything or not but I feel like I’ve been very fortunate to have lived with MGUS for so long & will probably continue living with it without it turning into MM.
I’m also thinking about joining a clinical trial if it would help understand this disorder for others & possibly even take away the chance of it ever progressing.
Has anyone on here ever been part of a trial?
Thanks for listening & I wish all the best!
Thank you yes it has taken about six weeks for me to wrap my head around this diagnosis so I am gradually getting back out there and doing my 2 mile walk and drinking my water and making wise choices with my food. I kinda let things slide. I didn’t have much of an appetite and I sure didn’t feel like going outside. Which is the best therapy in the world! You are an encourager and I do appreciate the good words you share
My mother is 63 years old.she got m protein value 0.43.she got results of free Kappa equals to 100 and Kappa lambd ratio to be 4.8 .And she got reported with IgG of Kappa type with gamma m spike ..Is this cancerous condition ?